Story about Sanfilippo Syndrome .

Heather Ashley

Nov 3, 2019

By: Melissa

Year Condition Began: 1991


My daughter was diagnosed with Sanfillippo Syndrome 3 a month after my son passed away at the the age of 26 days old. He was on life support and we has to disconnect life support due to him needing a heart and lung transplant and his organs were failing. The next month we were told Heather was terminally ill. She was 2 years old and there was no cure. She passed away exactly 1 year after her brother. It was the worst day of my life. 27 years later I still haven’t been able to get over it. I wasn’t able to have anymore children. Even though my husband and I are still together I don’t really think in his heart
Story about Sanfilippo Syndrome

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